Hello kizzy
Yup,.happy to give advice, pls get in touch
Fluffyollie xx
Hi Kizzie,
Yup, we are here. Sounds though you really do need to talk. So, plz get in touch.
Anne
sending you a private message
carole x
hi thanks for replying ive only just seen this so sorry for late reply, ok basically ive had issues with my walking for over 20 years i had a serious drink problem and didnt get sober till i was 27 had a baby settled down and over hte years ive went to my gps complaining about legs getting worse and worse they kept fobbing off saying it was due to my previous alcohol use but no tests when i try and walk they just tighten up to the point i physically cant move for years i didnt go back didnt see the point. had a heartattack in 2013 aged 39 cardiologist said they thought it was vascular had the tests not that just slightly in right leg asked docs to prescribe meds they didnt do it, went back to docs repeatedly because of burning in feet and legs to th point i cld scream he eventually reffered to me to neurology had brain and neck mri and nerve conductions. nerve conduction says he thinks small fibre problem in feet says its alcohol related irreversible and cant be fixed, the pain in my arms and numbish fingers tips probably neck also irreversible and legs probably back also irreversible thats it no other advise but to take gabapentin, brain mri showed at least 15 lesions in brain and at least 3 in periventricles so sent for lumber puncture now neurologist says she cant interpett results and went on leave and secretary passe d it to different doctor they havent bothered getting back to her, when i was asked about my medical history at first appointment i just said no problems so as not to sound like a hyprochondriac ive been in hospital in past on catheters and home catheter in past ive lost complete use of my legs temporarily ive had lots of little things that now knowing about ms i can honestly say i think are linked including really bad short term memory and no matter how hard i try i cant organise had some help with this i just always thought it was due to alcohol use in past, so im worried now what all this means am i just going to get fobbed off agin because of previous drinking ive been sober 16 years so i dont think that should still keep being blamed for everything, neurologist say she thinks it could be ms but shouldnt cause pain so legs are seperate issue to have another lumber mri on monday and balance problem in examination could be ms but maybe just due to previous drinking arghh sorry about long boring post im just frustrated and wanted a bit of advise from ppl who understand ms, btw it was them who suggested ms not me im having to a wheelchair now as i cant get further than my neighbours garden before the legs seize up im really struggling and depending on my man or teen kids to push me and feel like no one cares i have done it to myself but i dont think so im almost positive its ms
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wow Kizz…a lot going on there hun.
And I dont think its fair that any medic blames todays problems on what you did 16 years ago.
Maybe i`m wrong, but it seems very wrong and uncaring to write your problems off just like that.
Plus, as you say, it wasnt you who thought it could be MS…they said it to you.
I have never heard that drinking causes MS.
I`ll look out for other replies and see what they reckon.
pollx
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hi poll they havent said drinking has caused ms its my leg issues have been blamed on alcohol and neurologist thinks it cld be ms but she think balance problems could be a result of previous alcohol abuse but maybe ms im still waiting to get final results and lp results im just worried if lp is clear it will just be put down to drink and discharged and i dont understand how she cant interpret results shes a neurologist lol i dont know if it means theyve been messed up or something but the waiting is driving me insane
Blimey Kizzy, your post’s quite hard to read.
Trying to sort out what you’ve said in the past together with what you said here, you’ve had an MRI and an LP. Although you have lesions on the brain scan, your LP is unclear.
Your original neurologist has referred you to another and they’ve not got back to you.
You have a significant number of physical problems and some cognitive problems related to both memory and thought processing; but sorting out what was caused by your old alcohol habit, your heart attack and neurological damage that ‘may’ be caused by MS has left you in limbo. Additionally, you feel that sometimes the medical profession think you’re a bit of a hypochondriac.
If I have all of the above right, then it seems to me you need to get onto the hospitals neurology department and get an appointment with whichever neurologist is now responsible for unpicking your complex history and correctly reading your MRI and LP results. (Do correct me if any of this is wrong!)
Diagnosis of MS is usually only done if the LP supports the evidence of your medical history and MRI scans. So it seems that an MS diagnosis all hangs on the findings of your lumbar puncture.
So, in your position, I’d try and phone the neurologists secretary on Monday. Find out the name of the neurologist who is now responsible for your neurological care and ask for an appointment.
When you get this appointment, try to write down some notes to take with you about your medical history and current neurological symptoms. If possible, take someone with you who can keep the appointment on track and who will help you to get some resolution to the questions you have.
If you can’t get an appointment, try contacting your hospitals’ PALS service. This stands for Patient Advice and Liaison Service. They exist to help you with advice, liaison and complaints about the service you are given. You should be able to find the contact details from your local hospitals website.
Sue
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hi sue yep got most of that right, gps havent made me feel like hypochondriac they just blamed it on alcohol and said it was something i would have to learn to live with and no testing was done it was all based on their assumptions, last year one of them reffered me to neurology after 10 yrs of complaining saw a neurologist in nov he wanted to investigate more sent me for brain and neck mri when that came back with all these lesions he arranged a follow up with one of the consultants she then said that first doc considered ms and after results she also suspects but needed a lp to confirm, i phoned her secretary she told me she had sent the neurologist my results but had an email back saying unable to interpret them and has now went on leave so secretary passed the results to a different neurologist, to be fair the 2 neurologists ive seen have been lovely aprt from second one a bit abrupt but much nicer after she examined me so im just waiting to find out whats going to be result from lp and dont know if its paranoi but just worried it will be just blamed on my past and dischrged back to gp, sorry if i confused you i do that i jump from one thing to another and confuse ppl then half way through forget what i was talking i drive my man insane haha
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Given what has gone before, I don’t blame you for being anxious about that, but it does sound to me that they are taking you very seriously now. I do hope I’m right.
By the way, your posts would be easier to read if you broke them up into paragraphs. Many of us with MS have trouble with our eyes, and unbroken blocks of text can be tricky to read.
Alison
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hi alison, sorry about the writing im usually quite good that way, i was getting stressed and it all just came out in one big sentence, i hope your right and im just paranoid, hoping that they havent messed my results up as i honestly cant understand a neurologist being unable to interpret my results , how is that possible ?
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hiya ive had lp result back as negative and been dischrged
Good news in a sense, but not great if you feel left in the lurch.
Alison
I wonder if your neuro was at a loss with clear LP results? That is not well understood - as with MS generally. But that in particular.
hi vithfari i dont understand what you mean can you explain plz, yea alison i know what you mean but im back to square one although the secretary is asking for a consultant to see me and go over everything so heres hoping they agree and it will be with different doctor
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Hi Kizzy.
Sorry it was late and I have tendency to be incoherent, I guess.
I wonder:
if the neurologist was leaning towards diagnosing MS it would be reasonable to expect oligoclonal bands in the LP results (thought to be debris of nerve degeneration, I think). So if the LP is clear or even more confusing, almost clear, I wonder if that was why the neurologist said she couldn’t interpret the results? All speculation on my part.
Oligoclonal bands are not a clear sign of MS. People have been diagnosed without. I guess there were other very clear signs of MS in those cases.
I also indicated MS isn’t well understood. We don’t know the cause. Some mixture of environment and genetics but what exactly? Then there’s confusion over RRMS /SPMS/PPMS. Easy to define but grouping people with the definitions isn’t clear.
Sorry, I don’t think I’m helping.
thanks you are helping i understand now, i have at least 18 lesions on my brain and i dont think it can be classed as normal for a 41 year old so to discharge me is a disgrace as i didnt go there to get assesed fo ms they were the ones who said it to me after mri, i just feel upset that i cant walk and getting no help, i have struggled for 20 years with my legs so i dont think ths is acceptable, anyway have a phone appointment with gp today see if she is any clearer about whats going on
oh one more thing the neurologist says she thinks the legs are a completely seperate issue from the suspected ms as ms wouldnt cause pain in legs however from reading on here and google it seems what shes saying is rubbish
Yes saying that about pain is rubbish.
Kizzy
I hope your GP is a bit more helpful. It seems that the neurologist has decided what is wrong with you has no neurological basis. But you still need help and answers. Your GP may be able to get some clearer answers for you, and will hopefully be able to refer you to another specialist who can help.
Sue